This is the story of my family's ups and downs having a child with Cystic Fibrosis. Share our joys, worries, struggles, and triumphs.

Wednesday, February 12, 2014

Hope

Today Monkey had his clinic visit. The appointment went well. His weight is in the yellow zone still, but nothing to be concerned about. They think his constant runny nose may actually be caused by allergies, so we're going to try some allergy medicine and see if that helps.

For some reason he has developed a serious fear of the room where they take his weight, height, and vitals. As soon as we got near that room, he dropped to the floor in an absolute panic. He screamed and cried the entire time we were in there. The cutest thing happened though. As we were trying to get him to stand on the scale and he was totally freaking out, Dr. Thompson happened to walk by. Monkey LOVES Dr. Thompson. He saw the doctor in the hallway, got a huge smile, yelled "HI!", and ran out and hugged him. Dr. Thompson stopped and talked to him for a few minutes, came into the room and said "show me how you can stand on the big boy scale". Monkey hopped right up on the scale. We've been seeing the nurse practitioner the past few visits and Monkey has really missed his favorite doctor. I hope after what happened today the team will realize how much better Monkey does with Dr. Thompson and we'll get to see him again for our next appointment.

I asked to talk to someone from the research team this visit and Hubby and I were so excited by what she had to say. The first thing I asked was: Is "fixing" one of his mutations enough? And, as I thought, she said it is. Because that essentially makes his body work like a carrier (such as Hubby and me). We each have 1 mutated gene, but our bodies work fine, it takes 2 to show symptoms of the disease. So fixing one is all that is needed to "fix" someone with CF. That being said, the super exciting thing is that, out of the almost 2000 different CF gene mutations, the 2 that Monkey has are BOTH being highly researched. She basically said that she's pretty certain by the time he is old enough to swallow a pill, there will be a pill to essentially cure him. This means, rather than 3-4 different medications a day on top of 1-2 hours of chest therapy every day, Monkey will simply have to take one pill a day, for the rest of his LONG life (with the same life expectancy of any healthy person)!!!!

She said right now they are not testing these new medications in children as young as Monkey, but eventually they'll have to. She will be sure to let us know if there are any trials that he can be a part of.

So, for anyone who ever wondered, THIS is what I have been fighting for since he was diagnosed. THIS is why I work so hard to raise awareness and money for research. It is happening RIGHT NOW! This horrible disease is being cured, and I am helping it happen, and my baby is going to benefit from these medical advances and have a long, healthy life! I cry every time I think about it!!

This is the happy face I make thinking about this news! (It's actually kinda scary looking, but it's a happy face, really!)